Epilepsy and me

Just over 11 years ago, I had my first epileptic seizure at a friend’s 14th birthday party. We had all been doing karaoke in her front room when I fell to the ground mid-song and began to convulse. When my head first began to fall backwards, some of my friends had thought that I was jokingly singing a high note, but when I kept on falling they realised that something was wrong. My first seizure was unique in that unlike any other that I have had since, I was semi-aware of what was going on around me. Although I had no control of my body and could not see anything, I could hear my friends screaming. Unsurprisingly, this was quite a jarring experience for everyone. After having a second seizure a few months later, I was diagnosed with epilepsy.

Although I initially felt embarrassed, my friends presence during my first seizure was something that I would later be grateful for. I know through talking to other epileptics that trying to explain the condition can be very difficult, as epilepsy and all that comes with can be very challenging to convey to someone with no experience of it. It is an invisible disability, making it easy for others to forget (and impossible for strangers to know) that you have it. Because of this, the condition is one that you must try and learn to talk about not just for safety reasons, but in order to emotionally come to terms with the part that it plays in your life. As personal experiences with it vary so greatly, there is no neat definition that applies to all. I am however going to try and describe my own experience with epilepsy here.

Since my first seizure, I have had over seventy. This is due mainly to the fact that I have not yet found a drug that has fully controlled my condition. Often, I have found that the various medications are more tiring that the epilepsy itself. As my epilepsy remains uncontrolled, I have been prescribed many different types since being diagnosed – unfortunately the subjectivity present within epilepsy means that treatment for the condition largely relies on trial and error. Changing from one medication to another can take several months and during these adjustment periods side effects can feel much more pronounced. As I am writing this, I am on three different anti-epileptic drugs (AEDs) with one decreasing in dosage and another going up. The process is exhausting, however it is essential to retain hope.

I have had partial seizures before but the vast majority of mine have been tonic-clonic (formerly known as grand mal), meaning that losing complete consciousness and falling is an inevitability. Though the fits themselves can be very alarming for those around me, I am obviously never present to witness them- to me the fall has always been the most dangerous aspect of my epilepsy. Falling whilst conscious can be hazardous enough but when you are unconscious, you cannot feel pain so you could (for example) fall onto broken glass and not realise you were injured until regaining full consciousness. Whilst some people do get a warning before they have a seizure, I rarely do so I have to be mindful around water, fire, roads, stairs and anything else that could hurt me if I came into contact with it during a seizure.

There is a fine line between mindfulness and anxiety, and sometimes my mind can unwittingly venture into the latter. After my diagnosis, I found that ‘what if…? ’ were two words that became increasingly prominent in my thoughts. What if I have a fit in the road? What if I have a fit in the bath? What if I have a fit when I’m alone? These are of course all valid questions, but allowing them to dictate every aspect of my life would prevent me from doing almost anything! There are certain things such as driving that I accepted would not be safe for me to do a long time ago, but I believe that imposing excessive restrictions on myself due to my condition would have caused me a lot of unhappiness over the years. This is a subjective viewpoint- not everyone with epilepsy has the luxury of this kind of freedom. As I stated at the beginning this is only my experience of it, nothing more, nothing less.

Having to deal with my epilepsy and all of its consequences did have an impact on my education. Whilst the seizures are of course the definitive aspect of the condition, the recovery periods (particularly after a fall) and side effects of the various medications are also very time-consuming. Although I had a very good support system at school, I unavoidably took a lot of sick days and due to my poor attendance record I was politely asked to leave after completing my GCSEs. Fortunately, I was able to take a year out to recuperate. After doing so, I joined a nearby college, finished my A-levels and later went on to university. My main advice for those with epilepsy seeking to do the same would be to learn how to communicate with others about your condition. Whilst talking about your physical and emotional self may seem like a huge obstacle initially, once you overcome that barrier it does become easier. It took me a little longer than most, however in the end I graduated from university with a 2:1 and to this day, it is one of my proudest achievements.

Although it’s a difficult condition to live with if I was given the option to, I would not change being born with it. I don’t mean to sound as if I like having epilepsy- that would not only be insincere but insulting to the millions of people around the world dealing with the fallout of it on a daily basis. If I could be cured of it tomorrow then I would jump at the chance. However without ever having had it, I am not sure that I would have the same understanding of or appreciation for the issues that disabled people face, be it prejudice, a complete lack of social and financial support or insufficient (or non-existent) health care. Through having it, I have learnt so much about myself and have been able to develop into a person that I can be proud of.

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11 thoughts on “Epilepsy and me”

So well written .l have a daughter and a son with epilepsy.My son has other difficulties along with epilepsy.Although my daughter has it she manages to work as a carer and fortunately seizures are well managed with medication.As for my son more stays in hospital then l can remember but we soldier on.Its something that people with and people who care for people with epilepsy just learn to deal with as you quite rightly said its a hidden disability.

I’m pleased you connected with Yasmin’s words. She’s an inspiring women, and she has educated me a lot about the condition since meeting her last autumn. Thanks for sharing your own story; that’s what we want this site to be all about. I’ve passed on your comment to Yasmin.

Thank you so much for your feedback and for sharing your story- it means a lot. I’ve only ever seen one other person have a seizure and I was terrified but it really put into perspective the struggle that friends and families of those with epilepsy go through. The strength of people who deal with disabilities (be it directly or indirectly) never ceases to amaze me.

I have had epilepsy since I was nine years old. I also have grandma seizures and sometimes I can tell when I’m fixing to have one and it’s the worst feeling in the world. I have hurt my self many times from falling, I had a seizure about a month ago and I hurt my right shoulder I woke up in the emergency room and I couldn’t move my right arm it was because I tore some ligaments in my right shoulder when I fell on it. They said it would take about six months to heal completely. Thank you for sharing your story it does help to know that I’m not the only one who struggles with dealing with epilepsy I am 23 I don’t drive my friends do I want to I plan on driving in the future and finishing school and having my own place. It’s hard because I need a car to get back and forth to work and school and relying on my dad who works a fulltime job and who is moving in a year it’s hard and sometimes you just want to cry. Or give up but I keep trying!

I really hope your shoulder is feeling better. You’re so right, that feeling when you know you’re going to have one is awful. It’s so hard to describe to other people but when I have tried in the past, I’ve always said to me it’s like those falling dreams when you hit the ground and wake up… except you don’t wake up you just keep hitting the ground over and over.

Not driving is a huge inconvenience, especially when you don’t live in a city. I think feeling pissed off and having a little cry occasionally is actually good for you but ultimately focus on all of the things that you can do and stay strong.

Yasmin I read all that you wrote, I have lived with Epilispey most of my life from the time that it wasn’t even classed as an illness, I have done sponsred walks to get money to get a Epilispey unit started in our local hospital I tried for a operation years ago they said that there was no one that could do a operation like this,, Now many years later I have been operated on by the best in this feild I live in a big city in the UK I have just had a operation after trying every bit of medication out there,All I can say to you Yasmin is to think & Dream Big and hope that they will all come true. Sending loads of love and best wishes xx. P.S.Lilac suits you

Congratulations on going out there and doing the sponsored walks! During epilepsy week this year, I spoke to channel 5 news about the ‘postcode lottery’ in relation to epilepsy care in the UK- unfortunately the level of care does vary quite greatly depending on where you live and it’s wonderful that you are working to change that. I’m so pleased to hear about your operation too and I hope it all went well and that you’re recovering quickly :).

Hi Yasmin
I have Juvenile Myoclonic Epilepsy and was diagnosed when I was 23yrs even though technically my epilepsy started when I was 13 or 14yr old I had my first grand mal at 23yrs.
I have had a lot of different reactions when I have told someone about it. From the extremely over dramatic (someone raised their voice as if I was deaf after I told them) to the shrug of ‘oh right, cool’. I’ve never seen anyone have a seizure and am not sure if I want to. But after having a grand mal I have so many questions about what I did, what I looked like during it, etc. I think my husband and daughters get tired of me asking.
My husband and daughters are very supportive of me and without that support I’m not sure I could have coped all these yrs.
The only other person I know with Epilepsy is my niece and we don’t have the same type.
As I am writing this I am in hospital having a video monitoring test. My seizures were well controlled for yrs until last yr I started having grand mals 1 – 3 times a mnth. I am on Lamotrigine, I was also on epilem but in march ’16 I was in hospital for video monitoring and a blood test showed my body was absorbing the Epilem too quickly to have any effect and the doc told me to stop. Since then I have had 5 grand mals so am back for another EEG video monitoring. This time though I was asked to not take my lamotrigine during my stay. I have had a seizure this afternoon and am hoping this will show my doc what’s happening. Anyway, getting to my point; after reading your story I immediately felt you had written exactly what I feel and think. Reading your story has made me remember that I am not alone in having epilepsy.
Thank you for sharing.

I’m really glad you enjoyed my piece. It’s all too easy to start feeling isolated when coping with epilepsy (particularly on our bad days) and whilst I found writing this very therapeutic, the response has been overwhelming. Our community is one of the strongest resources we have- whether its for advice, friendship and/or support. The people I have met and spoken to along the way have been equally helpful and inspiring. Thank you for sharing your own story and being a part of that.

Like you, I’ve had lots of varied responses from people with regards to my condition- ranging from sheer terror to thoughtful and sensitive questions. All we can do is raise awareness and try to educate people. I’ve also wondered what I look like during a seizure- knowing that others see you at your most vulnerable and having to rely on the kindness and care of people you may not even know definitely takes some getting used to.

I’m so sorry to hear that your seizures have returned. It’s always disappointing particularly after having such a long period of control. I really hope that your doctor’s able to figure out what’s going on asap. In the meantime, stay strong.

Thank you for sharing your story. You have express the crux of the condition and informed the public at large, many of whom have no idea what or how epilepsy constrains those who live with it. Many of us relate to the ongoing need for courage and hope as we face yet another round of possible treatments. We fight on, we cannot give in and as we stand by each other in strength and support we build something to keep us living in hope.

I agree with you that having faced this condition has opened up a whole new way of looking at the multitude of people worldwide who suffer all kinds of disabilities every day and even though every night I fall asleep wishing for a cure, every morning I wake up grateful that I have my life, slightly imperfect though it may be, it is mine.

To you, all those who have responded and to all those who have thought about it, remember, tomorrow is another day.

All of the comments have really touched me and I feel privileged to be a part of such a supportive, caring community. Our condition can vary so greatly but we are so often united by our experiences- something I am very grateful for.